Noah Gets A Wheelchair | LOW MUSCLE TONE
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- Опубліковано 14 лип 2022
- It can be come for hypotonia, or low muscle tone, to go along with Autism. For our autistic son and teenager Noah this is definitely the case. Noah is almost 15 years old and earlier this year we got the news he will end up in a wheelchair in time so we are trying to help him be the most independent he can.
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I’m a paraplegic and I love my chair because it gives me independence. I bet Noah will love the freedom his new chair gives him! Also, there are cool accessories like light-up front caster wheels and cupholders.
Okay that sounds so cool! I will have to check them out because I am sure he would love them :)
As far as accessories go, there are power-assist devices on the market that hook up to the manual wheelchair. My insurance covered one called the SmartDrive for me. That’d be quite the learning experience for Noah, but I think that is also something to keep in mind if that is something he could benefit from rather than having both the manual wheelchair and the electric scooter in the house.
Awwy I'm sorry u have wheelchair issues
@@morganf4378 awwy I'm sorry u have wheelchair issues
I'm so glad he got his wheelchair! With more practice it will be so natural for him. I got a wheelchair at 13 for similar reasons. I remember getting through doors independently was the most difficult part for me. Lots of good videos on youtube as well to help the process.
Noah using a wheelchair for longer distances or when he is having a day when his body hurts is similar to car use. Some people drive their car for a trip to shops that are only a few blocks away and some people walk to do those trips. It's about getting to make choices. Now Noah has a choice. Choice is terrific. I know when I start to feel exhausted or my back hurts all my sensory issues and anxiety etc rise much higher and quite fast. So that can totally ruin what started out as an enjoyable time. My brain can then start connecting doing the grocery shopping with pain and overwhelm and awfulness. But if I didn't push myself past when my body hurt my brain wouldn't over generalise and say shopping equals awfulness. A wheelchair can make Noah's world bigger and accessing the community more accessible and enjoyable. That then enables more enjoyable times for the whole family. A wheelchair is a tool and in life the more tools we can choose from the more opportunities open up for us. I am soooo excited for him and the adventures it might get him to go on.
Also with changing the voice on Liam's iPad device That is genius. I think it may make it really appealing to him. I think if Liam did communicate with words spoken he would speak like that. Dinosaurs are his thing right now. I hope in future vlogs we hear it has been the help I think it very well might be.
Luv seeing you guys back more often .., I’m new and just catching up with your back videos … Noah is growing up to be such a handsome young man and his progress is amazing … you must be so proud of him 💕 we are just in the process of getting our oldest grandson who is six evaluated .. and you and your videos have helped me enormously understand things … luv to you all xxxx
Omg ! I love that you make new context more frequently. As a mom of two autistic kids, I appreciate your honesty and ideas. Thank You kindly to your whole family
Really glad to see him having fun with it for now! Doing fun things with my chair made the times when I really needed it (I use it mostly for fatigue/pain management due to EDS, but also to prevent fainting) so much easier to handle. And was a great incentive to learn how to use it as well as I can.
Wishing him the best in this process!
Hi I’m a quad and use a manual chair. The one thing that helps me are my wheelchair gloves. The best ones I’ve found are called gloves for life and they should help with propelling his chair! Hope this tip helps! 💙
Hi I have been watching your channel for years. I am also a part-time wheelchair user. I also have autism. I have mitochondrial disease which makes it so my body does not have the energy it needs to stay alive. In my early 20s I got my first tilite wheelchair and it I always had to tell people I am not wheelchair bound. Found I don’t need my wheelchair all the time but when I need it it allows me to experience life and to enjoy life I cannot even begin to express the difference in quality of life wheelchairs can provide. Noah I am so happy for you! You are strong and brave.
'Liking you vlogging more often? ' I LOVE IT!! So lovely to see you and the whole family, we've missed you so much 💕🇬🇧
Hi Stephani. I can kind of relate to Noah and using the wheelchair. I have Ehlers-Danlos syndrome and I am an ambulatory wheelchair user as well. It was a very long process indeed. I have state insurance as well, but they covered it and my power assist in full.
Noah is getting big. I bet he’ll be super tall like Lonnie Jr. 👍🏻
I'm loving that you're vloging more often !
Love seeing you guys more often. Love your new boundries, happy you guys are working everything out. Love seeing the kids grow into their own person. It's all good, more is always better.
Yes absolutely loving the VLOGS! I'm excited to see when there's a new one. I want to say I think you're an amazing mama and an inspiration especially to parents of children with special needs. My son is 4, turning 5 next month. My little guy is alot like Lex in some ways. Best wishes to your awesome fam! 🙂
Love seeing your family more often.
I love that you are posting more often!
I’m glad u are blogging more!😊
Yes! I love that you’re vlogging more! Have fun at the water park!
Really love that you're vlogging more ❤
I love watching all of your vlogs. Keeping them coming the more and merry. Lol
Absolutely moss seeing you and following. You are the first vlogger on UA-cam I started following ever when you were pregnant with little Liam I was also pregnant 🤰🏻 and have been following you ever since, … even inspired me to start my own journey in vlogging and advocating for special needs !!!! Do fit that I say thank you 🙏🏼 😊
So for* not do fit 🙄
Blame my visual impairment 😂
Thank you so much!
That's a good thing. He seems to like it. Prayers
I enjoy when you vlog and all of your videos. ❤️
Wow hes grown so much its nice to see him in this vlog and good luck with the new chair
Yay Noah! Im so glad he got his wheelchair! His smile makes me smile🥹🥺
That looks like a great chair! But it’s definitely hard work and a lot to learn, so he’s doing really well for his first try!
I never get tired of you and your family. I love y'all!!
I'm autistic and have low muscle tone. I can say that the pain definitely gets worse with age as well as losing more andmore mobility. The independence and pain relief that my wheelchair gives me is definitely a positive thing.
I'm autistic and have low muscle tone, but I've only noticed issues in non every day activities like weapon handling and CPR and generally being weaker than my peers.
Basically as long as I don't do anything athletic, I'm normal.
This is the first I've heard of low muscle tone being as serious. But then getting information on it is hard.
I don't seem very affected, but then I got physio as a kid, and did active recreational activities through joining the army cadets as a teenager, so maybe that helped improve my muscle tone? Within months of joining I could do CPR. Also I walked a lot as a child because my parents don't drive and love walking. I never struggled with walking, I was just late to start.
I probably just wasn't too bad with it to start with. I was diagnosed round the time when they were trying to figure out what was wrong with me. It took years to diagnose me with autism.
Yes loving the vlogs.
Poor Noah. I have a severe chronic pain condition & if I’m at 8 out of 10 pain I start getting ready for hospital if it doesn’t come down. I can’t even imagine not saying anything until it’s a 9/10, everyone knows because I’m moaning from the agony (I don’t scream unless I reach 10). I’m glad he’s finally getting the medical support he’s always deserved (Yay Colorado) & that Stephanie is watching him closely for signs of pain. Noah & I have something in common besides the pain, we both got mothers who advocate for us & love us & protect us. Feels pretty good huh Noah?
Yes yes i always enjoy all of your content. Take care.💙
I love love love your vlogs!!!
Noah just gets cuter every time I see him! And of course I love seeing your vlogs more often! Keep them coming! ❤️
Love that you are vlogging more
Yes I love it seeing you guys more often is great I have a wheelchair too that I use sometimes I have it is pink
Ummmmm yes please to more vlogs. Y’all always make my day. We are the same way with sunscreen with those Irish/Scottish/Welsh/English genes we glow and have lots of freckles.
As a part time wheelchair user myself I love my wheelchair as well. It's an adjustment at first but it's a good adjustment for me. I went from having to pick from going out with family and friends or walking our dogs because of how bad my pain is, now I can do both without being out of commission for days afterwards. Best advice is the more he gets out and sees that he can do more things independently the less apprehensive he will be
Thank you! That's what we are hoping :)
God Bless. Great parents are essential. Way to score twice! Go Noah!
I am an ambulatory wheelchair user. Have been for 18 years due to pain and easily tired. But am also legally blind so have never been able to go out in it independently. There was a time when I could follow spoken instructions from a sighted guide and push myself. I had e-motion wherls from a company called alber. You push them just the same as the wheels that noah has. Only e-motion are power assisted and support you if you don’t have a lot of strength to push. Now my shoulders are too weak to even let me do that. So someone hash to push me. But having a chair still enables me to do more than I would without it. Love it. Hope noah learns to love his too.
I definitely know and understand what Noah is going through. One out of my two roommates, also known as, Jacob some middle name Brosko, fell a few times while we were on vacation. He is Thirty-six (36) years of age.
Love the vlogs and everything I also love the autism ones because I'm autistic and can relate also what's the outro song at the end I love it
Noah’s growing up so fast 🥹
Gloves will be a big help. Pt or Ot can also give him tons of tips & tricks for easier & better use. Gloves for life - a great brand. Give it a month or so & he will be a pro.
Love your outfit & eyeshadow
Good job Mama!
Great vlog as always! I love you all so much! How is everyone? Yes I love it
Love the vlogs
great that he can get it now, to get used to it, and be more independent. PS: you didn't fully explain 'Ambulatory', for others watching; this means that the person is not a paraplegic, in the 'usual' sense, it is due to pain, weakness that this persons' capacity is reduced, so the chair is to preserve the capacity these people have, and allow them to enjoy events, instead of being tired, just from the trip there.
All the best Noah, You've got this, things are sent to try us, but it is our resilience, and fortitude that proves to the people we know; that we are, strong, adaptable and can take anything on.
I absolutely love the vlogs omg keep them coming 😘
Stephanie my son Autistic has same dx he will be 18 next year we got a wheelchair couple years ago my son can’t walk boardwalks, mall . My son still can walk but we use it for another A distance. My son has rods Also on each side of his hips. My son in PT at program and I bring him outside PT for years . Much love to you and Noah❤️
Love that you are vlogging more often. I also think you looked great in the hat!
Love the vlogging more often.
Cool Wheelchair Stephanie
I have Vascular EDS and I also am a ambulatory wheelchair user! I have a custom chair as well!
Best of luck to Noan with his new wheelchair
Love it
I like your vlogs very informational
Yes! Love watching your videos! So much good info. #newautismmama!
I used an wheelchair when we go out for long time and when we walked for an longer time because my both leg and foot get really painful and hurting and when I getting very tried then I take an break from walking,
I have bone on bone arthritis in both knees. It seemed to get worse when I lost weight & started hormone suppression therapy for my prostate cancer, as I’ve lost muscle tone. In the past (BC - Before Cancer) I could walk long distances with just light knee braces(my wife & I would walk 5 miles a day), no problem. But about a year ago, I found that walking around the grocery store would be very painful & theme parks…ugh…we started to have to rent a wheelchair for me. I can get around the house fine unless I’m having a flair up, then I use my cane, but really bad flair ups where one or both knees really swell up(which usually happens if I run out of switchel) even the cane use is painful. So we decided to get me a wheelchair. As our insurance will only pay for the very basic of WC, and a custom chair is out of the question financially, we happened to get lucky & find one at a local mobility supply store. It’s not the best & I can’t easily change the axle position (there’s 3), so it’s in the very rear slot which makes it harder to self propel sometimes, but at least I can be semi-independent & go to the store if need be as the chair is very lightweight & I can get it in & out of the back of my suv with little problem.
I get some people who give me the eye when I walk with my cane from the driver side to the back of the suv to get the chair out(and some people who actually are kind enough to offer their assistance), but I don’t let that bother me as this is my 1st step towards still being mobile & able to do things independently (it’s fun trying to steer a shopping cart while sitting in the chair…lol). I hope Noah takes it in stride when he gets those occasional looks from people who don’t realize you don’t need to be completely unable to walk to need a wheelchair.
Hope you have a nice day
Noah is growing up
Love the vlogs!!
I love your vlogs
I used to have a manual chair but now I have a motorized chair. Without a Chair I can’t go anywhere. Unfortunately my insurance won’t cover both a manual and a power chair anymore
Yes, it's nice that you are vlogging more often. That's good that Noah got his wheelchair.
he can also use his hand to stop when he's crossing the street, put his hand on the wheel, to prevent the chair from moving forward unti lhe's ready to push himself across the street he does NOT need to put the breaks on. He only needs the breaks when he is transfering in and out of it.
He doesn’t feel comfortable unless he puts the breaks on
you just have to take it one day at a time. the more you worry about what’s going to happen, your gonna be stressing about it.
Exactly! It's all we can do is just live in the moment :)
I have Cerebral palsy and I have a walker and a wheelchair with power. I use my wheelchair for long distance
I was also diagnosed with global hypotonia at one and a half by a neurologist and a brain MRI that diagnosed me with hypotonic cerebral at two years old
I have hypotonia but mine is caused from mild hypotonic cerebral palsy and i also have mild autism
I have mild cerebral palsy and I have to use a wheelchair for long distances. I am also on the spectrum.
What communication app do you use
so if he walks too much his legs hurt?
sorrh im asking, i just dont pick up imformation like that, i have to read it to understand.
Are you worried that if he uses the chair too much his muscles will be even weaker? I’m asking because when I had surgery on my knees I had to use a chair for long distances and my muscles were all messed up after that
That is a concern, it's why we are being selective when he uses it. We know what he can do without it becoming painful.
He could have the Spider-Man covers for his wheelchair wheels
I have a friend in the same situation she use a wheelchair to walk
Much better since you have been vlogging more frequently. 😊
Where did you get the chair? I might need one for myself and am looking for options! (I'm 15)
It was through insurance.
i will say that back is too high and, sometimes the ''support'' is too much, if the back is lower, not low low, but like a 14 inch back, hed again have better range of motion, while still having support and will actually be better with posture, the high high back like that actually causes the forward slump and having limited motion in your wheelchair can sometimes even make low muscle tone worse, so, as a long time user, and as someone who has set up wheelchairs for folks in the past, id say, get a lower back, take off the armrests and put side guards on instead, also move the center of gravity JUST A LITTLE BIT more forward so he has more wheel access, and the next wheelchair should have a 3 inch dump of the rear seat, as that helps support as well as promotes good posture and helps with range of motion. without compromising balance etc.
When did Noah’s voice get deeper/mature?
i have a wheelchair too but mine is powered
His hypotonia is interesting because toe-walkers typically have increased tone in their legs, not decreased. It's usually more of a core hypotonia in ASD. Has he been tested for all the connective tissue diseases and for metabolic/mitochondrial abnormalities? Sounds like a chromosomal link maybe?
No, toe walkovers might have strong calves but everything else in their body (including thighs) will be lower. What happened is actually very common in low tone toe walkers
Random, but your eyeshadow looks really nice. Thanks for the updates!
Awesome chair Noah you looked like you were enjoying it. I hope it helps you.
❤️
Noahs voice is cracking!!! Oh, please stop growing up sweetie 🥹😫
It might be because he needs to clear his throat or puberty lol.
@@LizzS17 yes which is why i said “stop growing up” 🙄 but no you think im an idiot huh?
I see has a seatbelt on in the wheelchair so I guess I’ll be using it when he seated in wheelchair
Since he’s growing so fast will the wheelchair fit him in a year? If he needs a different one does your insurance cover it? I’m so happy for him getting this one.
It's an adult wheelchair which will grow with him :)
take the arms off, and give him side guards, the arm rests get in the way of wheeling and make that motion awkward
YESSSSS I love u vlogging more!!! 😎😎🖤🖤🔥🔥
I'm getting a wheelchair soon due to my autism and ehlers danlos syndrome
My friend got her wheel chair from new something
Is he going to need it for a long time it's Brandy from Aurora
Have nellies staring spells been less or the same
Why would you rent a wheelchair if you have one already?
Because they are more water resilient. The one has has a bunch of padding that I don't know how it would do if it got wet.
@@OurLANDingCrew8 Oh ok makes sense!
you have to see a physical therapist to get a wheelchair
You also have to have a doctor put in for it (at least here in Colorado)
@@OurLANDingCrew8 yes you get the referral and then a OT does the measuring for a new wheelchair
Hi I’d like to know how
Old is noah now?and when did you start OT sessions with him?
He turns 15 next month and he started OT 2 years & 2 months ago so he was 12
@@OurLANDingCrew8 thanks for my replying im new to tour channel...i have a child in the spectrum too he is turning 5 this year but still can’t talk except for syllables like baba ,wawa etc..He is on OT sessions for 8 months now...Do you think my child can talk and follow instructions just like noah?Im so worried for his future😫
Soo can he still walk noah???? And how much does he have to use it???? Landing crue?????
I talked about this in the video ❤️
@@OurLANDingCrew8 i could not under stand???
We like the more frequent clogging!!
Yse